Blake, Jai and angel SKYLA

Curse of Friday the 13th

2010-08-19T07:24:00.002+10:00

Well another 13th of the month has just past us again. This time it was friday the 13th again. I lost Skyla on Friday the 13th so as you can imagine it was a hard day for me. By 9pm that night my night turned into another bad friday the 13th.
I spent the day at playgroup with Jai and all the mums and bubs. Since having Jai i have met some wonderful girls and now each week we try meet up at ones house. On my way to stopped off at the shops to pick up a chicken for lunch. I also grabbed a drink from a drink machine. Put my money in and pressed number 12. What happens!! I get the drink from spot number 13!! Wrong number and wrong drink. Next i head to my friends place who lives at house number (you guessed it) 13! I also had to drive passed where we had a service for Skyla that they stuffed up big time (another story). Anyways we get to my friends place and have a lovely catch up with the girls. It was great seeing everyone again as it had been a while. Jai has had a cold pretty much the last 2-3 mths straight. Anyway we had lunch then noticed Jai felt a bit warm. took his temp and it wasnt really high. 37.8 Gave him some panadol and went home. The rest of the arvo he seem a bit wingy and was slowly getting hotter and hotter. By 8pm he was 39. I stripped him down to his nappy and gave ahim panadol. sat him downstairs with us. at 830pm he was on Blake and did a little shake which freaked us out a bit. i took him off Blake and sat him with me. We have a family history of febrile convulsions as i had 13 as a baby and Blake had 6 and Jai was yet to have one. Well come 9pm and he fitted. It scared the hell out of me. It was friday the 13th again. How can this happen. i thought i was gonna loose him too. His fit lasted about 7min. During it he started vomiting so i was worried about him choking. I called an ambulance but they didnt get here for about 17min. By the time they arrived he was still out of it and moaning. It took a lot out of him but luckily he was ok. We spent overnight in hospital and found no reason for his fever or fit. Hopefuly this will be his first and last as i really dont need anything else to happen to my kids. So as you can see i am cursed when it comes to friday the 13th!

Yes we are still ALIVE!!

2010-06-17T17:08:00.005+10:00

Well i think this is well and truly long over due. Yes we are still ALIVE! We are all going ok. My little boy Jai turned 1 last month. I cant believe it, it has gone so so quick. It only feels like yesterday that we had our baby girl with us. We miss her terribly. Its still no easier. I cant believe it was 2yr on the 13th June that Skyla went to heaven. The days apart are going so quick yet my heart is still broken. People say time heals all wounds. Im sorry to say but that is not true. Well it isnt for me anyways. I just take it day by day and its my two beautiful boys that keep me going :) I love you Blake Skyla and Jai, xx

We finally picked out Skyla's Headstone and it is the most beautiful one i have ever seen. Nothing but the best for our princess. I hope you love it baby girl. It took us nearly two years to find the perfect one but i was glad we waited as it is perfect.

Blake is in yr 5 at school. He is off to Canberra on Monday for a overnight school excursion. He should have fun but it is freezing there. Hope he stays rugged up. Packing lots of warm clothes for him i will. Blake seems to be doing well at school and is still playing soccer on the weekends. This year he is playing goaly half games. Seems to be enjoying it. He is still loving his scooter and skateboards. Any chance he gets he wants to go to the skate park. Getting too cold now for that.

Jai has been walking since he was 10mths. Looking at him you would think he is already 2 or older even, LOL he is a big boy. Cheeky too. He loves his brother so much. They adore each other. I love watching them play together. I could sit and watch for hours. They just laugh and laugh. Jai is very cheeky too.

For Jai's birthday weekend we had lots of family come stay from New Zealand. It was so nice of the ones that could come and spend time with us. We had a big party for Jai at one of the parks near us. It was an awesome day with all our family and friends. Jai got some lovely presents. He got so spoilt. It was a bittersweet weekend as on the Sunday we unveiled Skyla's headstone. Its a big thing in New Zealand. Unveiling of a headstone. We did this on the same weekend so that family from NZ could be here for both. We also had family come from QLD and Melbourne. It was awesome everyone being here. Had a great weekend.

I also wanted to thank everyone who thought about Skyla on her 2yr anniversary. I was overwhelmed with all your love and support from everyone all over the world. I have never even met most of you yet u still thought about us. You are all amazing people. Thankyou so much. People lit candles, released balloons and even took photos. Thankyou so so much.

So many CDH babies have passed away lately. It is so sad. Its devastating that so many parents are going through what we went through. There have also been few survivors. You kids are amazing. We are so proud of all of you. Angels and survivors. All Angels are always in my heart, xxx

I wont bore you with anymore. I will let u enjoy looking at some pics over the last few months. I will try keep this updated but i spend most days on Facebook these days. You can add me as a friend if you like. There is a link on the right --

xxx

About time for an update

2009-11-13T11:57:00.007+11:00

Well sorry i havent updated in a while. WOW how time flies. Jai is now 6mths and doing really well. Blake has finished playing soccer on Saturdays. He did really well for his first year at soccer. I am so proud of him. He is my soccer star.

We ended up moving house in September to a much nicer place. Living area is much bigger but a very small yard. Luckily we have the park just up the road.

On October 13th we celebrated Skyla's 2nd Birthday. It was a sad day but but we made it through. We just went to the cemetery and released some balloons. I couldnt believe it had be two years since i had her and 16mths since i seen her beautiful face and held her in my arms. I am starting to get upset as i am starting to forget the way she smelt and felt. It is starting to scare me. I dont want to forget these things and it hurts so damn much! I just want my baby girl here with me and for her to be healthy. But at the same time i know if i still had Skyla i wouldnt have my beautiful baby boy Jai. Jai and Blake are what help me to get bye. Without them who knows what i would do. I do know that Skyla is looking out for her brothers from up there in heaven. How lucky are they to have their own special Angel watching over them. And what a special Angel she is too.

That night of Skyla's birthday Blake went and stayed at my mums and i was home alone with Jai. Jai had been well but awoke at 12am screaming his lungs off. This went on for over an hour and i couldnt stop him. He had a temp of 39.9. I gave him medicine but the screaming was really scaring me so i decided to take him to the local hospital. We ended up staying there til 7 in the morning and was told he had a lung infection and given antibiotics and told to keep up with panadol. He got worse that day. Screaming and couldnt get his temp below 38.8 so decided to take him to the childrens hospital where Skyla was. They are the best there. They did a blood test and his white cell count was at 26. that is pretty high but they couldnt find the source of the infection. They decided he needed to have a lumbur puncture. It broke my heart but they had to rule out everything. He was such a brave boy. Mummy was more upset i think. We ended up being admitted and he started iv antibiotics. Still to this day we dont know what was wrong but he improved quickly. We stayed from wednesday to friday. He even got his photo with spiderman!! I was glad to be back home and out of the hospital

Since then Jai has started sitting up all by himself, rolling all over the place now. He weighs 9kg and is getting so tall. It wont be long before his crawling i think. God help me!! LOL

Blake has been going pretty good a t school but hating it as usual. He is playing cricket for sport and loving it!! He had a little halloween party. He had so much fun. All the kids looked amazing.

Now i am just trying to organise what to get the kids for Christmas. It is so hard trying to decide on what to get them. Blake is especially hard to buy for. What do you buy a 9yr old that has everything?

Off to see Britney Monday night. My sister got me a ticket, thanks Tash. Just hope it will be good. Apparently its been pretty bad. So many are walking out of her concerts saying it is terrible. Oh well, will find out soon i guess. We have good seating too. Diamond reserve!! Row A so i think we will be pretty close to her!

I will try and keep updates regular. I know i always say that but this time i will!! Hope everyone is doing ok. Thinking of all our cherubs and sadly there are now too many more Angels. All the new Angel mummys and daddys are in my thoughts and prayers. xxx

Pictures of my beautiful boys!!!

Happy 2nd Birthday my beautiful Angel

2009-10-13T20:21:00.004+11:00

HAPPY 2ND BIRTHDAY SKYLA!!!

Today is my sweet baby girls 2nd Birthday!!! 13th October 2009 and here we are alone without our baby girl. Its been 16mths since we said goodbye. And not a day goes bye that i dont think about my beautiful sweet baby girl.

Today we went to the cemetery to wish her a happy 2nd birthday. on our way we stopped off to get some balloons and flowers for our princess. The sun was out but a bit windy too. We brought Jai's bumbo chair with us so we could get pics of him and Blake at Skyla's grave. He was such a good boy. All smiles he was. We sang her happy birthday and released some balloons.

Happy Birthday Princess, i hope you had a good day today. I hope you had a huge party in heaven with Lilly and all your angel friends. Did you like your balloons. Im sorry that your tinkerbell balloon didnt make it to you. You see the wind really picked up and blew it straight into a tree. I was so disappointed. When Jai let go of his balloon it didnt want to leave. It stayed down low for a while but then all of a sudden it just took off and was gone. We miss you and love you so much darlin. I hope you are happy and have found peace. Love mummy, daddy, Blake and Jai xoxoxoxox

~ Happy Birthday Angel ~

As we wake up in the morning
and your not here to see,
we grasp for some reality...
that our dreams can never be.

We'll bake a cake & buy balloons,
we'll burn a candle too.
We'll play your music, look at pictures
and shed some tears for you.

We'll imagine what the day would bring,
if only you weren't gone.
You'd run and laugh, and jump about,
we'd sing the birthday song.

You should be here today,
excited as can be...
Sifting through the toys and wrap,
bursting forth with glee...

But God had other plans for you,
these plans, we'll never know.
Today, the candle burns,
...with no tiny lips to blow.

We'll do our best to make it through,
this day we meet with dread.
We'll do this all for you, my love...
on this road of grief we tread.

So on this day... my baby girl
You're birthday number two...
your in our hearts and in our thoughts
....as we send our love to you.

Sharon Kivisto 4/2/99

My Birthday In Heaven

You’re wondering if I’ll celebrate
My birthday (way up here)
I know you’re missing me today
I feel your essence near.

God planned a special day for me
He told me with a wink
He’d ordered me a special cake
(It’s Angel food, I think)

I’m getting lots of hugs from God
He’s really good at that
And every time that I walk by
He gives my head a pat

Balloons will fill the streets for me
They float up through the clouds
And we have lots of clowns up here
That make us laugh out loud

There is a birthday carousel
Jeweled horses ride the wind
With music playing oh so sweet…
The magic never ends

I’ve made so many friends, you see
We laugh and play and sing
We ride our bikes and play jump rope
And sleep in Angel’s wings

We’ll have our cake and ice cream
And open gifts, surprise!
But we don’t blow out our candles here
Instead, they light the skies

Sharon Kivisto 4/2/99

Maxton's Memorable Moments

2009-07-26T06:58:00.005+10:00

The other day i recieved a parcel in the post. It was from Ashley Standifer, Angel Maxtons mummy. Ashley's son Maxton was also born with CDH. Sadly Maxton lost his fight March 21st 2009. He fought a couragous battle for 18days. Ashley recieved many gifts after loosing her beautiful boy. It is here she made Maxton's Memorable Moments.She decided to create special works of art in memory of all our precious CDH Angels. Here is a picture of what Ashley made in loving memory of my beautiful girl Skyla. Isnt it beautiful! Thankyou so much Ashley, i love it! It brought tears to my eyes when i seen it. Maxton would be so proud of his mummy!

Need Help

2009-07-20T11:21:00.002+10:00

Hi everyone. I need help with my blog. I want to know how do i change my blog into a 3 column blog? I changed my background to a 3 column one but couldnt work out how to change the layout. I was worried id loose everything so i went back to a 2 column. Any ideas?

Thanks

One year in Heaven

2009-06-13T15:19:00.001+10:00

Today marks 1 year since my beautiful little girl went to Heaven. this week has been very tough knowing that today would mean 365 days since i seen her beautiful smile, 365 days since i held her in my arms and got to kiss her sweet face. What i would do just to have one more day with her again. I miss her so much. My heart is broken in two. I wonder what she would be doing if she was still here. Would we still be in hospital. How would she be with her new little brother. She should be 20mths today, instead my beautiful little girl is in heaven. Its not fair. Why do we have to go through loosing a child. No parent should have to bury their child before them. I think about Skyla everyday. I know she is watching over us and sending angel hugs and kisses down to us. She has since blessed us with a healthy little boy. I worried about falling pregnant so soon after loosing my baby girl. I wondered if she thought i would forget her, but i realised Jai was meant to be. Everything happens for a reason and Skyla sent him to me. I know people say things happen for a reason but i will NEVER know why Skyla was meant to leave us. She fought so hard for 8 whole months and now she is in heaven with a new healthy body playing with all the other CDH babies that have also lost their lives to this horrible birth defect. There is also another Angel in heaven with Skyla. On May 17th i went to say goodbye to a beautiful little girl named Lilly. Lilly was Skyla's room-mate when she was in the ward. I got really close to her mum and nanna and we stayed in touch after loosing Skyla. Sadly Lilly had lost her fight to survive on May 18th 2009. She was a fighter, now an Angel in heaven with Skyla. Me and Lilly's mum think it was the girls plan all along. They were meant to be together, together forever.
Today was a hard day. I didnt really have a good sleep, was awake most of the night. In the morning i went and got Skyla a beautiful big butterfly balloon then we headed off to the cemetery. I thought it was gonna be just the family but there ended up being about 20 people. It was nice. We got her some beautiful flowers. Joe's mum said a few words.I shed too many tears then released her balloon. Hope you liked it baby girl. I hope you and Lilly didnt fight over it. We then all went off to the club for some lunch and now i am home and cant get my baby girl off my mind. I miss her so much. I love you bubba.

Its been a year since we said goodbye,you got your wings you chose to fly. I miss your smile, i miss your touch, i miss the way you smelled, I wish you could have met your brother, to have a chance to be your mother, hear you laugh and watch you grow, all these things ill never know. Forever loved, never forgotten. Miss you baby girl. Always in our hearts,

Love mummy, daddy, Blake and your baby brother Jai xoxoxoxoxox

Lots of cute pics

2009-06-12T10:13:00.004+10:00

My little boy is getting so big. He has grown 7cm since birth unless they got his length wrong. Seems alot to me. His birth weight was 3670gm, now he is 5195gm.

Meeting Nanny and Koro from NZ

2009-06-12T09:51:00.003+10:00

Jai got to meet his Nanny and Koro from New Zealand this week for the first time. They came over to meet him and for Skyla's 1yr Angel Anniversary which is tomorrow. Please think of us tomorrow as i am having a hard time again. Lots of tears shed this week. It doesnt seem to be getting any easier.

Brotherly LOVE

2009-05-13T18:46:00.001+10:00

My little man is finally here

2009-05-09T15:09:00.006+10:00

JAI KEWA TEMAIPI arrived on Tuesday 5th May by c-section at 215pm weighing 3.67kg and 53cm long. Perfect in everyway. He is so beautiful.

Happy Mothers Day everyone. Today was hard without my princess, but i know Skyla is watching over us. Look at my gift from her, a beautiful healthy boy. Thankyou sweetheart, miss you so much.

The Countdown Is On, A little scare and a NAME!!

2009-04-28T07:48:00.005+10:00

Wow, i am getting so close to meeting my little man. Only 9 more sleeps. I am booked for c-section on the 7th May. We have also decided on a name. His name will be

JAI KEWA TEMAIPI

The 7th May also marks 1 year from when SKYLA had 3 cardiac arrests in 24hrs. They told me that day she wouldnt survive the night. I really tried to not have him this day but i didnt have any other choice but too. Or unless i wanted to have him on the 14th May. That would have made me nearly 41wks and there was no way i was going to go over. I am anxious enough as it is. So now that i am booked for the 7th, as hard as it is going to be i will try and make a happy day out of a sad. He may even decide to come on his own in the meantime. I guess i am going to be very emotional no matter when i have him anyways, Not having my little girl here with us. I miss her so so much. It is still so hard. I love you SKYLA and miss ya bubba but i know you are looking out for your little brother. Thanks darlin.

I had a little scare yesterday. I woke up at 430am and couldnt go back to sleep. At about 830am i was starting to worry as i didnt think i had felt him move. I got myself worked up so i rang the hospital. They told me to come in so they could put the monitor on him. After about 30min of monitoring him they werent really happy with it as they didnt see any spike in his heartrate and i still wasnt really feeling any movements. His heartbeat was fine though. They gave me some apple juice and got me to lay on my side. After that he decided to put on a performance and they were happy with what they saw. Cheeky little bugger he is already. Also too i have been really stressing out lately as it is getting close. I guess its only normal after loosing my beautiful girl. I wonder at times if its all in my head. I just want little Jai out now and safe in my arms. I cant wait to meet him. Anyways after he put on a little show they sent me home which was great. They gave me a kick chart so i can keep track of his movements.

On thursday 30th i have my next checkup and then Friday i have my pre-admission appointment. I will let you all know how it goes.

A Parcel In The Post

2009-04-09T14:15:00.004+10:00

I just wanted to say thankyou to Gil, Kaden Brown's mum. Kaden is a CDH survivor from Scotland. Click here to view his blog. Kaden was born in July 07. We have followed each others journey with CDH and kept in touch through our blogs and emails. Well the other day i recieved a parcel in the mail. It was a gorgous outfit and bib for my little man to be. Thankyou so much GIL. I love it. I will try post some pics soon.

PS, Gil should have had her new baby yesterday. Gil was booked in for a C-Section. I cant wait to see some pictures of your new little man. Hope all is well with mum and bub.

Baby Shower

2009-04-09T14:06:00.005+10:00

On April 5th, my mum and sister Tash put on a baby shower for me. I was a bit nervous bout having one cause i was worried it would bring up memories of Skyla. Im so glad i had it though cause i ended up having a really great day. Thanks so much mum and Tash. I only cried once before everyone got there cause silly me brought up my beautiful princess. I hid it from them though. Well i dont think they new i cried. Oh well i guess they will know now. There was about 14 of us there. We played a few games and ate some great food. I got so many lovely presents. This time all blue. Thankyou so much to everyone for my presents and i hope you all had a great day. I know i shore did. Now all i need is my new little man. I cant wait. Just about 4weeks to go. I am still waiting on Tash to email me the photos so i can add them to this post. Check back later. Lots of photos coming. Thanks again mum and Tash for giving me a fantastic day. xxx

Blake's 9th Birthday

2009-04-06T10:02:00.003+10:00

On March 28th it was Blake's 9th Birthday. We went out for dinner at our local RSL and after that was a school Bingo night fundraiser at the RSL. It was a good night. Blake won the lucky door prize, 2 games of bingo. I won 2 and my mum won 3. You could say that we cleaned up, lol. Towards the end we were too embarressed to say bingo cause we kept winning all the time. On the 29th which was a sunday, Blake had his birthday party at Bowling. He had invited 9 of his best mates. He had a great time. They played 2 games, then had hotdogs, nuggets, chips, drinks then ice cream. Although he didnt win, he had a great day and got lots of lovely presents. By the time it was over i just wanted to go home and sleep. I was exhausted. Im so glad i didnt have to clean up. But i guess that happens when your 34weeks pregnant.

HAPPY BIRTHDAY BLAKE!!!!

LOVE MUM

PS. As you can see by the new heading of my blog, i have decided to just continue on with this blog. You can still read my beautiful girl's story by clicking on her picture at the top. I will no longer use my other blog.

4D pics of my little guy

2009-03-05T16:29:00.004+11:00

My little guy 30wks 5 days
Skyla at 30wks 4days. I think her little brother is gonna look alot like her.

Today i had my checkup. Everything went well. They were gonna book me in for a scan at my next appointment but they were able to fit me in today. I was happy, i got to see my little boy for the 2nd time. Boy he looks just like Skyla. He weighs in at 1574gms and is growing great. The only worry i now have is that during the scan the cord was right in his face. Too close to his neck for my liking. Other than that he is perfect and is gonna stay that way.

Blake and Roxy

2009-02-26T10:44:00.005+11:00

Our new edition to our family

2009-02-24T17:23:00.004+11:00

No i havent had bubby yet, about 10wks for my little boy to go, but i did get another baby. Blake got a 6wk old puppy. We were given her from our ex neighbors. Thanks guys. Me and Blake absolutly love her. Blake named her Roxy. She is a Golden Retriever. She is beautiful. She is huge!!! She weighs in at 5.9kg already. We got her yesterday. Today i took her to the vets for her 6wk needle. She even fell asleep whilst the vet gave her her needle. I will upload some photos of Blake and Roxy soon. I may even put one up of my pregnant belly. Well, we will see bout that one.

Update

2009-02-03T11:06:00.002+11:00

Hi everyone, i know its been a while since i updated. Its just hard writing on Skyla's blog. We had a fetal echo on the babies heart and our cardiologist told me that he is a boring baby. Boring to me is fantastic!! Means i have a healthy baby with a healthy heart. That made my day. Thankyou to everyone who voted on the names poll. But we still havent decided on a name. I do have it down to 3 though, only 1 from the list. I think now it will be out of LUCA, KYNAN or JAI. Maybe we will just wait til he is born then pic which one suits best. Its so hard deciding on a name. I have my next check up on thursday 5th Feb. Not sure if i am having another scan but i am having the Glucose test thing. I am hoping to discuss whether or not i can have a c section too. Thats what i really want anyways. If i have the c-section they will have to take me a week earlier i think. I am due May 9th. Mothers day is May 10th. I really want to be out of hospital by mothers day. Last mothers day i had my baby girl with me and we were in hospital. This mothers day i dont want to be in hospital, i want my little boy with me and Blake. We will go and see our Angel at her resting place.

February 13th is fast approaching. It will mean that my sweet baby girl has been gone 8ths. I lost my baby girl on Friday the 13th. Skyla was 8mths old to the day. Now on her 8mth anniversary its bloody friday the 13th again. I hate this day. Next month is also friday the 13th. I cant escape them. Then i have Valentines Day Feb 14th, my baby will have been dead longer than she was alive. 8ths and 1 day. It hurts so much. Im a bawling mess typing this. I cant hardly see through all my tears.

I miss you so much baby girl. The day you died, part of me died too. I wish i could hold you in my arms again, kiss your beautiful face. I would never let you go Skyla. I love you baby girl and miss you so much. Love mummy xoxoxox

What Name do you like best?

2008-12-19T13:33:00.002+11:00

Just after everyones opinion on a few names i like. Not saying we will pick one of these as something else may come up. Out of them, there is one name that i really really like. Not saying which one though. There is a poll on the right. Please vote if you can. Thanks

Our little boy sent from our beautiful angel SKYLA

2008-12-11T16:11:00.005+11:00

Hi everyone, well i had my 18wk Morph scan today and everything is fantastic. They got a good look at his heart and all looks good. The sub chorionic hemorrhage that i had seems to have disappeared which is a big relief. They checked to see if he had 2 collarbones, i know that sounds weird but Skyla only had 1. Well he has 2. And no CDH!!! I am so happy. They also did some 3D pics of our little guy today. I ended up taking a photo of them with my phone. I am only 18wks 5days but the 3D pics turned out pretty good considering how early i am. There is two pictures of his face and an awsome one of him kneeling. It looks really cool, oh and a picture just to prove he really is a boy. LOL. They also cancelled the fetal echo that was planned for tuesday 16th Dec and made an appointment for Jan 20th, i will be 24wks by then so the cardiologist should be able to get a good look then but as far as they were concerned today, everything is perfect. Yay.

The closer it is getting to christmas the harder it seems to be getting. I am really missing my baby girl so much. Next Monday is my birthday too. Last year i had my little girl here with me and she was doing so well. We were at the ward and she wasnt even on any oxygen. We were thinking we were going home. God how i miss her so much. We love you Skyla. Thankyou for looking out for your little brother. I cant Wait til he is older so i can tell him all about his beautiful big sister SKYLA. What a brave girl you were and how strong you were. He will be so proud. We all are. Miss you bubba and we love you so much. Keep looking out for us up there. Cant wait til i see you again. Love mummy. xoxo

A Star In The Sky

2008-12-05T06:40:00.004+11:00

Just after we lost our beautiful girl, 2 of my best friends got us a gift. They told me and Joe about it the day we buried Skyla. It is her very own Star In The Sky. Here are the co-ordinates.

SKYLA MANAWA TEMAIPI,
Libra RA 15h 18m 38s D-13' 59'

Thankyou so much Jenni and Marissa

27TH November- A Big Day

2008-11-27T18:23:00.007+11:00

Today was a really big day for us, and a hard one at that. We met with Skyla's Dr and social worker at 1pm to get her autopsy report. It was still Pulmonary Hypotension episode which caused her to arrest. Although they didnt find a syndrome or genetic problem they still think she did have one but just couldnt put a name to it.
Now onto our news. We are having a BABY!!!!! And a healthy one at that. We had a scan today. I am 16wks 5days. I am due May 9th which is one day before Mothers Day. The stomach and everything is exactly where it should be. Yay no CDH. I am so happy. They still have to check the heart out in more detail but so far everything looks great. Now onto the sex, GIRL or BOY. I asked them and they are 90% sure we are having a BOY!!!!!!!!!! Now all we have to do is come up with a name for our little man. I told Blake today that he is getting a little brother. He was happy but i know he really wanted a sister. The first thing he asked me was "Is he Healthy". Thats all we want. Then he gave me the biggest kiss and cuddle. I knew the baby had to be healthy especially with a big sister in heaven watching over us all. Thanks Skyla, we love you and miss you so much bubba. Thankyou for sending mummy, daddy and Blake a healthy bubby. We love you.God how i wish our little girl was still here to make our family complete. As the days pass, it doesnt get any easier. I miss her so much. Having a new bubby on the way is never gonna replace our little girl. I hope it does help to ease our pain a little.

Back at Sydney Childrens Hospital

2008-11-26T15:20:00.003+11:00

Tommorrow me and Joe have to go back to the Childrens Hospital at Randwick to get Skyla's autopsy report off her Dr. Finally. We know she had a pulmonary hypotensive episode which caused her to go into cardiac arrest but her Dr wants to go through everything with us and give us the final report. I have known about this since last week and as much as i want to get this over with. Im a bloody mess. I just know i will probably be crying through the whole meeting. I am dreading it. My emotions are all over the place. I will let everyone know how it goes tommorrow and if they found anything that i may not know about. I also have some other news that i will tell you tommorrow once i get back from the hospital. I am hoping my news that i have to share will be good news. Please pray that it is.

Another CDH angel, Baby Gretchen Falhaber, born 12th Nov 2008 passed away 21st Nov 2008 Her CP is BabyGretchenFalhaber Please send some love and support to her family at this sad time.
Another CDH baby born, Johnathen Alexander born 18th Nov and placed on ECMO the following day. Please keep him and his family in your thoughts and prayers.

Heaven gets another Beautiful Angel

2008-10-31T18:05:00.004+11:00

Reese Renee Kostjuk30/10/07 - 30/10/08
Heaven recieved another beautiful Angel on 30th October 2008 at 3pm
Reese was taken to heaven on her first birthday. Born on 30th October 07 with CDH. Spent her whole life in hosptial. A fighter til the end. Please pray for her beautiful family at this sad time.

Blake is doing the Guard Of Honour for the Rugby League World Cup Australia vs New Zealand game

2008-10-26T06:54:00.003+11:00

Just a quick note, i have some exciting news about Blake. Tonight is the opening ceremony of the Rugby League World Cup and Blake's rugby league team has been chosen to be in the Guard of Honour for the Australia vs New Zealand game. We are so excited. What an honour. I will try to take lots of photos and update whan i can. Dont know if they will show him on the TV but he will be wearing his Hurstville United clothes which are blue and white. Photos to come. Keep a look out for him. Im sure Blake's little sister will be looking down and will be so proud of her big brother.

Our Angel Is Watching Over Us

2008-10-16T09:31:00.003+11:00

On Monday 13th October, Skyla's Birthday, my mum and dad went down to our holiday house as we are getting new tenants for the house. On the Tuesday 14th October they headed off into town to do a few erands. To get into town they have to drive on the highway. On there way, they were doing about 90km p/hr when all of a sudden a car coming the other way spun out of control doing about 100km p/hr and right into them. They had no time to move out of the way. The car was ridden off as was the other car. They were both ok, thank god. My dad seriously thought that that was it. Their time was up. He cant believe they escaped with no injuries. The other driver was a 23yr old who escaped serious injury too. They were so lucky. Thankyou bubba so much for watching over nanny and poppy. You really are our guardian angel. Love you hunny. Miss you so much. Love mummy

Pregnancy and Infant Loss Day OCT 15th

2008-10-15T18:23:00.001+11:00

Please remember our Angels today

Balloon Release Skyla's Ist Birthday

2008-10-14T13:47:00.010+11:00

HAPPY 1ST BIRTHDAY SKYLA

Your family Skyla, we miss you so much bubba. We love you. Happy Birthday Princess

Your family back in New Zealand Bubba, They love and and miss you

My cousin Karen's kids Aimee and Brendan from Perth WA releasing balloons for our angel. Thankyou

My friend Amanda releasing balloon for our princess, Thankyou

Jen, Ryan, Shane, Jens mum, a family friend and Skyla's best friend Matilda releasing balloons for our princess, Thanks guys

This balloon release is from Babies in the Sky friend Vicky and her beautiful Angel Aubrey, all the way from Crown point, Indiana USA. Thankyou so much

HAPPY 1ST BIRTHDAY MY BEAUTIFUL PRINCESS

2008-10-13T07:08:00.004+11:00

Today is your 1st Birthday SKYLA, how i wish it were different. We were meant to be having a beautiful party hunny, lots of presents, lots of fun and laughter, lots of babies and friends joining in on your special day. So far all mummy has done is shed tear after tear after tear. I miss you so much. I cant believe its already been 1 year. Its been 4mths since you left us. Thats already been half your life without us. Its not fair.
Yesterday we did a little balloon release for you at the cemetery because nanny, poppy, Aunty Tash and Zaya couldnt make it today. I hope you enjoyed your balloons. We were planning on coming out to see you today at 12pm but Blake has school today, 1st day back after the holidays so we will be coming to see you at about 4pm. Sorry we cant make it sooner. We will be bringing lots more balloons. I bet you and your little friends cant wait for more balloons. They are so much fun. Also some friends and family that couldnt make it have done there own balloon release just for you. I told them to take photos so mummy will put them up as i get them. You will love them. I hope that your friends and family have thrown you a big party in heaven my darling. I just wish we were there with you. I just want to hold you and kiss your beautiful face again. We are so sad without you. As i type this i can hardly see the computer through all mummys tears. Well i hope you have a good birthday today darling, im sure you will have lots of fun with your friends and i cant wait to see you when we get there. We love you baby girl. We miss you so much.
HAPPY 1ST BIRTHDAY PRINCESS!! LOVE MUMMY, DADDY AND BLAKEY XOXOXOXOXOXOXOXOX

Happy 1st Birthday
We wish we could see your beautiful face
We wish you were here today
We would laugh, play and sing Happy Birthday
Tearing the wrapping paper off your toys
playing with all the girls and boys
Just learning to walk, we'd see
But all these things aren't meant to be
You're spending your birthday in heaven above
So, all we can do is send our love
Release some balloons, take flowers to your grave
To celebrate your birth and the life they couldn't save
Try and try as they may
You're not with us today
We hope heaven throws a party so grand
And helps us all to understand
Today as we recall your birth, we smile
And be happy you were with us for a while
A life short-lived, gone too soon
We sing "Happy Birthday" as we send a balloon
We send it up and far away
In hopes it reaches you today
For with it we send a wish with love
Have a Happy Birthday In Heaven Above...

author unknown

Skyla's 1st Birthday, Balloon Release

2008-10-07T07:43:00.004+11:00

In less than 1wk it will be my baby girls 1st birthday. Monday 13th October she should of been turning 1. I should be organizing a big beautiful party for her and buying her lots of beautiful presents. Its not fair. I miss her so much. The closer its getting to her birthday, the harder it seems to be. We have decided that we want to do a balloon release for Skyla. It will be on the 13th October at 12pm. It will be in the Karinya Children's section of Woronora Cemetery at Skyla's grave. As it is a Monday i know people may not be able to get the day off so feel free to come on Sunday if you like. We will be there about 1pm. To those people that are unable to attend, some people have mentioned that they might do their own little balloon release. I thought that was a fantastic idea. If you do that can you please take photos and send them through to my email please so i can put them up on the site. My email is krisgbee@hotmail.com . Thanks.

3 months Angel

2008-09-14T11:45:00.002+10:00

Yesterday marked 3months since our beautiful little girl went to heaven. It is still so incredibly hard. It only feels like yesterday she was here. We miss her so much. I think about her nearly every minute of every day. The only good thing is that i know that she is happy now. Free from pain and suffering. We will always love you bubba. You are forever in our hearts. I hope you are happy up there Skyla. Love you and miss ya darlin.

Love mummy xoxoxox

Happy Fathers Day, Daddy

2008-09-07T14:34:00.004+10:00

To My Daddy

A gift for you on Fathers Day,
What on earth could it be?
I know the gift you really want,
Is to once again, have me.
Or perhaps the gift of understanding,
To make sense of a senseless loss.

I'm sorry, my dearest Daddy,
But for those gifts, you must talk to the boss.
The gifts that I can give today,
Are memories, both sad and sweet.
From the touch of your hand on Mummy's tummy,
To my tiny little feet.

Remember the joy you felt inside,
When you found out you would be my Daddy?
The great big smiles upon your face,
You were over the moon, you were so happy.
Remember when you felt me move,
The wonder and love you'd feel?
Remember it today Daddy,
It just might help you heal.
Remember the little cuddles we had,
And the moments that we shared.

Remember my little nose,
And the colour of my hair,
I love you dearest Daddy, you know that this is true.
Just keep your memories of me alive,
And I will always live in you.

Author unknown

I love you daddy, I miss you so so much. I know that you came to see me today, with mummy and Blake. Thanks for my beautiful flowers.

Love your little angel
SKYLA MANAWA xoxoxoxoxoxox

Heaven gets another Angel

2008-08-21T07:49:00.009+10:00

William Ethan Morgan 19/08/08 - 20/08/08
I am deeply saddened this morning as i woke to an update that baby William Ethan Morgan had lost his fight against CDH. Please pray for his beautiful family as they grieve for their precious son. It brought back so many memories of the day my beautiful girl SKYLA became an angel too. We really need to find a cure for CDH. CDH is devastating. We have lost too many babies in the last three months. Skyla, Seth, Daniel and now little William. We have lost too many over the years. Life is just not fair. Please also pray for baby girl, Elliott Arcile Reed . She too was born on 19/08/08 and is begining her fight against CDH.

My New Blog

2008-08-04T10:54:00.007+10:00

MY PRINCESS IN HEAVEN

For those who do not know i have created a new blog. http://lifeafterskyla.blogspot.com
It's about my family trying to move on after the loss of our precious little girl. I will try and update when i can but at the moment i am having trouble moving forward. It is very hard. People keep telling me she is at peace now and in a better place. I know that, but she should be with us. I feel like i failed her, i couldnt protect her and save her. Im so sorry hunny. Sorry we are not with you anymore. We miss you so much. I wish i could see you in my dreams. Daddy says you and him play together in his dreams nearly every night. You have no trachy or feeding tubes and you're in your beautiful butterfly dress. You talk, laugh and play with daddy. I wish you could come into my dreams. I just relive that day over and over. We love you darlin, and miss you so so much.

Skyla's Results

2008-07-24T15:21:00.005+10:00

Today i rang Skyla's pediatrician to see if her autopsy results were in. He told us the main reason she passed away was from a Severe Pulmonary Hypertension episode which then caused her to go into Acute Heart Failure. He said her Lungs were small but not small enough that they were incompatible with life. Her Lungs showed patches of infections but not from a new infection. They were still healing from her older infections. It showed that she didn't have severe reflux. Her Kidneys were fine but her Liver was very swollen but that would have been caused by her Cardiac Arrest because all her blood was rushing to try and save her brain and heart. We wont get the final report until September i don't think. It will go into alot more detail and we will be having a meeting at the hospital so they will go through everything with us then.
Today i made an appointment to go and see a councillor, don't know how it will go but i guess it couldn't hurt. Last night i really lost it. I was in bed watching TV and i just started bawling my eyes out. I must of cried myself to sleep because next thing i knew it was morning. I wish i could dream about her. Instead i re-live the day over and over and over. The worst day of my life. Friday 13th June 2008.

Prayers need for my friends baby ZAC. He is in ICU where Skyla was. He is a very sick little boy at the moment. He has Wiskott Aldrich Syndrome. He has No immunity and a blood disorder. Today he is meant to be having Heart surgery. Please send some prayers his way. His blog is http://zacruglesswas.blogspot.com There is a link to his site in babies blogs on the right.

Two More Angels In Heaven

2008-07-18T10:11:00.008+10:00

The last few days have been tough. Life is just not fair. Two more CDH babies got their angel wings. I was following there stories throughout Skyla's journey. Baby Seth was born a week after Skyla had passed and little Daniel was 7mths. It is so heartbreaking seeing other parents going through what we went through. CDH is devastating. Life wasnt meant to be like this. With all the hard work of researchers, surgeons and critical care teams the mortality rate of CDH only has a survival rate of 50%. I cant wait til the day when there is a major breakthrough and no one has to watch their child go through so much pain and suffering. Some babies do survive this horrible birth defect, but some people including us have to suffer the loss of loosing a baby to CDH.

Baby, Seth Van Dyke, 25/06/08 - 16/07/08
www.caringbridge.org/visit/babyseth

Baby, Daniel Bradley Gallagher, 14/12/07 - 17/07/08
http://333daniel.blogspot.com

They were both two strong little boys, now ^angels^ in heaven with our little angel ^SKYLA^. I hope your having fun with your new friends hunny. We love you and miss you more and more everyday.

One Month Already

2008-07-13T20:44:00.005+10:00

13/07/08 Today, it's been one month since you got your angel wings. It has gone so quick. You would have been 9 months old today hunny. It only feels like yesterday you were here with us. We miss you so much. I thought i was dealing with loosing you ok but the truth is darlin, i cry my eyes out everyday. I think of you all day everyday. Your all i can think about. I just want to be able to hold you, smell you, cuddle and kiss you again. I know that your not in any pain anymore up there in heaven, but i wish you were here with us, with your family, where you belong. We are lost without you. It just doesnt seem to be getting any easier. It seems to get harder everyday. We came to visit you today. Mummy and daddy bought you flowers. I hope you liked them. We seen that you had a visitor during the week. Someone bought you some yellow flowers and a pink teddy. The teddy was cute. I wish they left a note, as i have no idea who they were from to thank them. It was lovely. I hope your having fun up there baby girl. We love you and miss you more and more everyday.

Love mummy, daddy and Blake

Blake's Tribute to his Beautiful Sister SKYLA

2008-07-10T17:51:00.004+10:00

Blake made this video for you Skyla. Mummy helped. Blake was so proud of you darlin. He misses you so much, we all do.

Love your big brother BLAKE

The Day Before You Became An ANGEL

2008-07-09T13:57:00.002+10:00

These were the last photos i took of my beautiful little girl SKYLA MANAWA TEMAIPI. They were taken the 12/06/08. They day before we lost you. You were going so well darlin. Mummy hadnt taken any pictures of you and me in a while. Im so glad we took them that day. My last photo of you and me i was kissing you. The other photo its like you were saying goodbye. I miss you so much baby girl. Just remember we will always love you. You will be in our hearts forever. I hope you are watching over us up there. I cant wait til we see you again. We miss you

Love mummy, daddy and Blake
xoxoxoxoxoxoxoxoxoxoxoxoxox

SKYLA MANAWA TEMAIPI R.I.P

2008-07-07T11:51:00.007+10:00

Skyla, Our Angel in Heaven

2008-06-30T20:05:00.005+10:00

Below is our tribute to our beautiful little girl, SKYLA MANAWA TEMAIPI.
We love you and miss you so much hunny. You will be forever in our hearts. Not a day goes by that we dont think about you. I dont know what to do without you bubba. I miss you so much. Its so hard baby girl. But I know that your in a better place now darling. No more drugs, tubes or pain. I hope your having fun up there my little angel. I can see you now, running around in your beautiful dress chasing all the butterflies with all your friends. I love you Skyla. I cant wait til the day when my time comes to see my beautiful little girl again. I hope you will be there waiting for mummy. Until that time comes honey, just remember we will always love you.
Aunty Tash left a little note at your grave with some beautiful flowers. Ill read it to you. To Our Beautiful Princess
Fly high Skyla,
To the clouds above
Not too high Darlin,
We need your love

thankyou

2008-06-21T09:41:00.004+10:00

21/06/08 I want to thank all who came to celebrate Skyla's life with us yesterday. It was a special day and we felt blessed to have so many family and friends with us on the day. A special thankyou to all Skyla's wonderful nurses that came. I couldnt believe how many of you came. It really showed how special our little girl was to so many people. For everyone else that couldnt make it, i know that you were all there in spirit, thinking of us that day. Thankyou. Thankyou for everyones flowers,cards and comments on her blog. She really bought so many people together. I havent got everyones addresses to send out thankyou cards so i just want to thank everybody from the bottom of our hearts.

Kristy, Joe, Blake and our little angel in heaven Skyla xoxox

Skylas funeral arrangements

2008-06-18T08:07:00.002+10:00

Kristy and Joe warmly invite family and friends to attend Skyla's Funeral Service, following an overnight Tangi at the Uniting Church at 41 Coleridge St Riverwood. The sevice will take place on Friday 20th June 2008 appointed to commence at 12:30pm in the West Chapel, Woronora Cemetery, Linden St SUTHERLAND. Buriel will take place in the adjoining Karinya Childrens Section.

Thankyou for everyones thoughts and prayers. It means so much to us all.

Kristy and Joe

OUR LITTLE ANGEL

2008-06-16T08:22:00.003+10:00

My sister took this picture of my beautiful girl after she had passed away. She sent it to me last night. I couldnt believe it when i seen it. I thought it was my eyes playing up on me. Can you see the shadow around her body. The angels came to get her and take her to heaven. Your an angel now SKYLA. No more pain my beautiful little sweetheart. We love you so much hunny. We are gonna miss you so so much darlin. We love you.

We are still working out the funeral arrangements today and ill let everyone know asap. We just dont know when she will be released as they will be doing an autopsy on tuesday so it may take a few days. Thankyou for everyones prayers, love and support. It means so much to us at this heartbreaking time in our lives.

Skyla Manawa Temaipi 13/10/07 - 13/6/08

2008-06-14T07:33:00.006+10:00

13.6.08 I dont know where to begin or even how to write this. Our beautiful little girl lost her fight today, Friday 13th June 2008 at 10:15am. Today she grew her angel wings and became the perfect angel. She was so strong and so brave. Skyla you were a true fighter hunny bun. You fought and fought right to the very end. Today you were 8mths old to the day. You arrested again darlin and they tried and tried to get you back but it was just too much for your little body to take. They tried for 40minutes honey but it was just too much for you. After that they stopped bagging and resusitation on you and then they gave you to me. You passed away in mummys arms. It was so hard but im just glad that you had your mummy there with you when you got your angel wings. We had 8mths with our beautiful girl. They were the best 8mths of our lives. We were so lucky to have had you in our lives. Mummy, daddy and Blake and all your family and friends will never ever forget you Skyla. You will be in our hearts forever. We loved you so much Skyla. Your at peace now darling. Spread your wings and fly.
I just want to thank everyone for all there love and support through out this. It really meant alot to all of us. thankyou.

I will update again soon with Skylas funeral arrangements once its all set into place.
Kristy, Joe and family

Still having the occasional desat

2008-06-09T20:54:00.006+10:00

9/6/08 On the 6/6/08 Skyla was moved to isolation as they thought she had gastric as she was having lots of runny poos. They did a few stool samples but they came back negative. I think its a combination of teething and antibiotics. She was moved back to her old bed space on the 8/6/08 as they were clear. She has still been having the occasional desat and needing bagging. She has had 4 more episodes since the 6/6/08. Sats in the 60s and 70s. They still seem to be with a poo and sometimes with suction. I have been learning to do the trachy tapes everyday and Skyla had been coping well with them but lately she has been going dusky and we are having to turn her oxygen up to anywhere from 30 to 60 and sometimes we have to give her a O2 breath of 100%. When she is settled she is on O2 25%, peep 6, rate 6, and pc above rate 6. It is slowly coming down which is great. You just never know with Skyla. One minute she is great and the next she is needing to be bagged as she totally flips out and has a episode. Its so scary. I just wish all these lung problems can just vanish and for her to be healthy so we can have our baby girl home with us. Skyla wil be 8mths on Friday 13th of June. Thats 8mths my little girl has spent in hospital. Its so not fair. She had her first tummy time session on friday. Her first one in a really long time. She didnt want a bar of it. Absolutely hated it and started crying. On Monday 2nd june her weight was 5.26kg. Thursday 5th june it was 5.1kg. We weighed her today and she weighed an amazing 5.57kg. I couldnt believe it. She had put on so much weight. We did put her milk up from 28mls p/h to 30mls and we increased her calories from 28 to 30. She has been pretty positive with her fluid balance but she doesnt look puffy at all. Her tummy is a bit distended though but i think that has to do with all the wind she has. She definatly takes after her father in that department. HEHEHE. Thanks for your prayers, please keep them coming.

Kristy

Another Rough Night

2008-06-06T11:15:00.002+10:00

6/6/08 Skyla had another rough night last night. At 11pm she dropped her sats again and had to bagged. She was blue and mottled. They had to give her a IM dose of midazalum to calm her down. She did it again at 6am. Same thing, mottled, blue and had to be bagged again. Sats 50%. They gave her another IM dose of midaz. Again it was after a dirty nappy. Her temp got up to 39.3. They have also upped her dose of clonidine from 5 twice a day to 10 three times a day. They are hoping this will keep her nice and calm. They have also started her on a dose of oral antibiotics just incase she is brewing something. Please pray she isnt as she is impossible to get a line into her, especially if she gets alot worse. Please keep the prayers coming for Skyla, she really needs them again.

Turned blue and more temperatures

2008-06-05T21:44:00.003+10:00

5/6/08 I had gone home last night as Skyla had been having a great day. I called her nurse this morning at 6am and the said she had a good night but has been partying since 4am. Wide awake and thrashing around. I arrived at the hospital this morning at about 7 50am. Just as i pulled in to the car park i received a phone call from Skyla's nurse she had through the night. I freaked out when i heard her nurses voice. I new something was wrong straight away. Before she could really say anything i just said "is she ok". Our nurse Gail said "yes, but she did just have one of her blue spells". She had a dirty nappy (Skyla cant stand a dirty nappy), and went blue and mottled. Sats had a trace in the 50s. Wasnt a good trace but she was definitely blue. She was bagged for about a minute. She was given some chloral hydrate (sedative to calm her down). I arrived about 30min after it happened. When i seen her she was pretty agitated and crying. As soon as she seen me she smiled and calmed down. Her sats then were 100%. I could only stay with her for a minutes as the Dr rounds were just about to start. I didnt want leave but i had too. The rest of the day she was very unsettled and she then had a temp of 38.8. She was given panadol and it came down to 38 and pretty much stayed there for most of the day. I am really worried she is brewing something again. Please pray that she can just stay better and for these temps, blue spells and infections can stay away. She has been through so much in her little life. She doesnt need anything else. Please keep Skyla in your thoughts and prayers as she still needs them. Thank you

Her Ist outing out of ICU since Trachy

2008-06-05T21:26:00.005+10:00

3/6/08 Today is the beginning of gold week. A major fundraising event for the hospital. All this week we will be having lots of celebrities come to to the hospital to meet all the sick kiddies. It really puts a smile on all the kids faces, even the parents. Today we had visits from HI 5, sponge bob square pants and Brian McFadden. I was lucky enough to have a photo with him. He was really nice. As they didnt come in to ICU, they were unable to meet our brave little girl. At about 2pm i got some great news. They said Skyla was able to go for a walk in her pram. I nearly cried. Her only time in a pram was for about 10min on xmas day and thats been it, and she was asleep for that. I was so excited. As i didnt have my pram at hospital, we used the ICUs pram and off we went. We first went around ICU twice then we were allowed to leave ICU for the first time in a long time. She was wide awake and looking around. She was loving it. Even though we only ventured out down the corridor, it was great just being outside the ICU. I pushed Skyla and the nurse had to push the ventilator next to her. Its hard work but so worth it. We even bumped into sponge bob. Skyla wasnt interested in him one little bit, but oh well. We sure did have fun.

Improving Again

2008-06-01T20:54:00.004+10:00

1/6/08 Skyla is getting better by the day. She does still have lots of secretions though. Other than that, there are no more temperatures and major desats. She does desat now and then but that is because she is needing a suction. She did have a canula in her hand but was taken out yesterday as it was leaking and her hand swelled up. She is now on oral antibiotics though her gastrastomy tube in her belly. They plan on stopping them on tuesday. Her vent settings are O2 30, peep 6, rate 12 and pc above peep 8. We are hoping to get her off the rate soon which will then mean she is on cpap pressure support. We weighed her the other day and she is now 5.2kg, 11.44 pounds. She is putting on weight but not as quick as we would have liked but at least she is moving forward. She is now on 28mls p/hr of elecare. Up from 26mls p/hr.

Another Infection

2008-05-30T08:17:00.004+10:00

30/5/08 Over the last few days Skyla has been having lots of temperatures. Mostly In the high 38s, the highest has been 39.7 They think she has another infection. We have done cultures, wee samples, trachy swabs but nothing seems to be showing up. On Monday her sats dropped to 50% and wouldnt come back up so she had to be bagged. A few hours later they were 47% but come straight back up without being bagged. She has heaps and heaps of secretions too. As she is nearly impossible to get a central line into her they decided to just go with a iv cannula. She had one in her foot that lasted 1 day and yesterday they put one in her hand. She has been started on vancomyson and cefotaxime (not sure of spelling). They cover a range of things as we are not sure what we are up against again. Just when things are going so well, she goes down hill again. Its one huge roller coaster ride that we just want to end. When we find out what she has i will update as soon as i can. Thank you for all your prayers. Please keep them coming as Skyla really needs them again.

Having a great week

2008-05-25T19:58:00.005+10:00

25/5/08 Skyla has had a really good week. She has been having lots of physio, occupational therapy and music therapy. She has also had visits from the clown Drs. She is smiling all the time which makes me so happy to see. Yesterday she had her 6th month immunizations which she wasnt impressed with. She only cried a bit. She is so brave. That night she did play up a bit. Her sats dropped a few times and she was working really hard. She also had 1 temp of 38.2. They did a chest xray to make sure she there weren't any changes in her little lungs. It did show that her right lung was a little bit more wet than before. The drs put it down to the immunizations though and her wet lungs because she has been pretty positive with her urine output. Nearly every day she is at least 200 to 350mls positive. They have been giving her lasix for that. They dont seem to worried as she isn't puffy at all. I have been starting to watch and learn about the trachy. I have held the trachy during tape changes. They have to be changed everyday and the trachy gets changed once a week. Not to keen on doing that yet. It is scary. She also has a big granulation of skin at the site. It looks pretty gross. I think ill wait til it heals a bit more. Today i started giving her her medications and i also did my first suction today. I was so nervous but it wasn't as bad as i thought it would be. Her vent settings at the moment are O2 30, peep 6, rate 15 and pc above peep 6. She doesn't really need her rate as she is breathing well above it. I am hoping they turn it off this week and then she will be on cpap pressure support. The Drs still think she will be on the vent for 6mths or so. I don't think she really needs it for that long, but its just that they want her to grow and get stronger which really will be the best thing for her in the end. With her having that extra support too it will really help her to grow. I just want her well so that she can come home. I haven't had the chance to really enjoy being her mummy and doing mummy things. I dont get to sleep next to her as you are not allowed to in ICU and she has been in ICU for about 28wks of her life and probably another 6mths to go in ICU so it is really hard. I cant just pick her up when i want to either, i have to ask to pick up my own daughter and because of the vent tubing i need someone to hold that when i do pick her up. It is so hard for me and my family. She has only ever been outside once, and that day it was Christmas day and just before we walked outside she decided to go to sleep. It was only for 10minutes but thats been her only time outside. It is so hard, not being able to do normal things. We weighed her last thursday and she was 4.98kg. She is still in newborn nappies and also still wearing 000 clothes at nearly 8mths of age.

Our little princess

2008-05-17T11:18:00.003+10:00

16/5/08 Today Skyla had a EEG done on her head. They just wanted to make sure that everything is ok and that there is nothing major going on. She kept waking up through it so it did take a little while to complete. She did eventually fall asleep after a little while. I was very nervous waiting for the results, they said they would be back at 4pm. Anyway the results came back and everything was fine thank god. One less thing to worry about for now. They Drs and nurses still cant believe how great she looks. One nurse said she must have 9 lives. My little girl isn't planning on going anywhere. She has fought this hard, defied the odds. She doesn't plan on giving up without a massive fight. She is a true battler. Keep fighting on my darling. We will get there in the end, it is going to take a few more months but the time will come when you will finally come home so we can be a family all together. We love you so much Skyla.

First bath with Trachy

2008-05-17T11:01:00.003+10:00

15/5/08 Today Skyla had her first bath since her trachy. She loved it. Its been a pretty long time since she had a proper bath. I think she has only had about 4 since Febuary because she has been so sick and her pulling out her peg twice we were unable to give her a bath. (Just so you know, she did have lots of bed baths. Nothing beats a real one though.)

Getting better

2008-05-17T10:51:00.004+10:00

Over the last few days Skyla has stopped dropping her heart rate. When asleep it now sits around the 90s. Im so relieved. She just keeps on improving. It is fantastic. She is smiling all the time now. Its so hard to get a photo of her smiling because everytime you go to take a photo she looks at the camera and stops smiling. Its only a fluke that we got the picture above. Im so happy to see her looking so much better and she is so happy all the time. She is still on alot of sedation so she is still pretty sleepy. So when she is awake its not for very long. Sorry i havent updated in a while just been abit nervous leaving her. Thanks for all your support, especially all of Wyatts friends and family. It really means alot to all of us.

Having a rough time again

2008-05-12T08:11:00.003+10:00

11/5/08 Since her last arrest Skyla had been going really well until mothers day. Today she started to get very agitated throughout the early hours of sunday morning. They had to give her a dose of diazapam to calm her down. that didnt work so they gave her some clonidine. She was still very agitated so they decided to give her a bit more diazapam. She finally went to sleep but then it all hit her at once. She was dropping her heart rate right down again. Heartrate of 60-85. She is so immune to all the meds so they end up giving her more and more but then she gets too sedated. All her other sats have been good. Her gases have been great. Its just her very low heart rate and the fact that she is so agitated. She is still not out of the woods yet. The Drs and nurses cant even believe she is still here with us. They really thought they had lost her. Please continue to pray that Skyla can continue on fighting so that she can come home one day soon. I am very worried about her low heart rate. Im worried it will get too low and arrest again. We cant afford for that to happen. Her little heart still needs to recover from her other arrests. Her liver is improving too which is fantastic news. Thanks again for all your support and prayers. I will try and update again soon.
Kristy, Joe, Blake and Skyla

Our Little Fighter "SKYLA MANAWA TEMAIPI" Look at her NOW!

2008-05-10T12:26:00.004+10:00

GO SKYLA GO!!!!!!!!

2008-05-09T08:49:00.006+10:00

The 1st pic is when her left lung collapsed after trachy change. You cant even really see it at all. The 2nd one is about 15hrs later. As you can see her lungs are pretty crappy. Alot of scar tissue. Atleast her lungs can improve in time, well at least until she is about 8yrs old

9/5/08 Yesterday afternoon Skyla had a head ultrasound and a liver ultrasound. This showed that her liver is a bit damaged from the arrest but the Drs have started her on some medication to help it to recover. They are hoping it will only take days to a few weeks. They also found on her head ultrasound that her ventricles are dilated a bit. They will look at her old ultrasounds to see if there is much difference and they also said there is a small collection of something on top of the brain at the front. They wont really know much more until she really wakes up and we see how she is. Im sure that they will do a head ct scan once she is more stable. I just hope there is no permanent damage done. Yesterday afternoon they also did her first trachy change in ICU. It went ok but her left lung did collapse as they did it. They have since given her some physio and she is laying with her left side up. After her trachy change they stopped the muscle relaxant so that she could wake up. It took about 1 hour for her to wake up. It was so good to see her eyes again. The only problem we are having with her at the moment is her heart rate. It is sitting so low. Its ranging from 90-60. It has hit 59 once. They gave her some meds to speed it up a bit but it didnt last long. The drs dont seem really worried as her sats and her BP have been very stable so it isnt compromising anything else. Its still very scary though. I dont like it when its that low . She went back to sleep cause she is still on alot of sedation. I went off to bed last night at 10pm. I rang a few times through the night and they said she was really good. I was so happy. I came back down this morning and they told me she has been wide awake, alert and even following the nurse with her eyes. That is a great sign. And in true Skyla style, she even managed to disconnect herself from the ventilator and grab hold of her peg. My Skyla is amazing. I just hope and pray that things will keep on improving from here on out. I just want to thank everyone for all their love and support for Skyla and our family. It sure seems like it is working. We just have to keep it up and for Skyla to keep on fighting. The Drs have said that we aren't out of danger yet but things are certainly looking alot better.

Love Kristy, Joe, Blake and our little fighter SKYLA

Our little fighter just keeps fighting on

2008-05-08T09:29:00.003+10:00

8/5/08 I left Skyla last night at 11pm. I didnt want to but i was so exhausted. I was still at the hospital just 2 floors above Skyla. I rang down at 1am, 4am, and 6am. She was being really good. Her sats dropped a bit and they had to bag her twice because of secretions in her trachy but other than that she had a really good night. I came back down to her this morning a 630am. Still improving which is great. She even opened her eyes again this morning. She just keeps on surprising everyone. The nurses didnt expect her to be here when they came in for the night shift last night. They couldnt believe how well she looked. I just got told that the Dr rounds are over so i better head back up now to see her. She may have her first trachy change today and may even be stable enough to go to theatre's. If thats the case then after that is done they will be able to take her off the muscle relaxant so she will then be able to wake up. My social worker just told me that the Drs cant believe how well she is doing. That just made my day. I know we arent out of trouble yet but she just keeps on proving to everyone how much of a fighter she really is. Im so proud of you darling. Im so proud that you are my daughter and just remember that we all love you very much and everyone out there is praying for you.

3 Arrests in 24hrs, Drs dont think she will make it

2008-05-08T09:00:00.005+10:00

7/5/08 The Drs think Skyla is in septic shock. They really wanted to take her central line out because they think that its the line that is causing all the problems. They have tried and tried to get lines in to her little body but all her veins are had it. She also has pneumonia on the left lung and another infection in her trachy. Over the last few days they have probably tried heaps of times to get a line into her. Over the last 24 hrs she has arrested 3 times. Her last arrest was at 6am this morning. They sat down with us and pretty much told us that she isnt going to make it. I am devastated. They say that they will do everything they can to save her but the more she arrests the more damage it is doing to her little body and the harder it will be to bring her back if she arrests again. Please pray for my beautiful little Skyla. After her 6am arrest she has had a pretty good day. Her BP has stayed up and her sats have been ok. She is on alot of support on the vent. O2 70 peep 7 rate 35 and pc^peep 18. At about 4pm today a guy from radiology department came up with his ultrasound machine to see if they could find a vein for a new line. We had SUCCESS! They were able to get a line in so that they can take out the one out. I was very happy. She is on so many antibiotics at the moment trying to cover the infections. Tonight she opened her eyes for the first time in about 5days. She has been muscle relaxed because she has a new trachy. She seems like she is much better already. The Drs were happy they got a line in but have told us we are not out of the woods yet. We just have to keep praying that Skyla continues to keep on fighting. The way she has done already she aint going anywhere without a fight. You are so so strong darlin. Just keep fighting. We love you hunny.

Not doing so well

2008-05-06T09:07:00.003+10:00

6/5/08 Yesterday Skyla started to drop her BP. Her normal map for her is between 51-90. She was sitting in the 40s then dropped to 33. As they went to give her some albumin her pressure dropped to 27. Her heart rate went right down to 43. They had to give her adrenalin again and did cpr on her for 2minutes. she come back up in all it lasted 4minutes or so. They did a chest xray which showed pnemonia on her left lung which is her bad lung. her tracy has also grown a bug but they arent sure what it is yet. She did it again at 3am. Dropped her BP. They gave her more albumin. This works for a little while then it seems to keep getting lower. Today she was meant to go to theartres for her trachy change. They have decided she is too unstable to leave ICU. They will do it in the ICU instead. They have warned me cause she is so sick at the moment that it is dangerous and if they cant get a new trachy in they will have to close it back up and intubate her orally. Please pray that everything goes to plan as i dont know how much more her little body can take. She is still 4.4kg, about 9pound something i think and she is nearly 7mths. Hang in there my beautiful little . We love you so much. You are such a brave little baby . Keep fighting hunny.

Tracheostomy

2008-05-01T22:31:00.004+10:00

1/5/08 From 430am to 12 30pm today Skyla has been wide awake and thrashing around all over the place. They upped her morphine from 20 to 50 and her midaz from 2 to 5 but it seemed to do absolutly nothing to calm her. She is immune to everything. At 1 30pm today Skyla headed off to theatres for her trachy. I was so scared as this will be her 5th general anesthetic in 6mths. Her last one she went blue 4 times in theatre, so you can see why i was scared. They told me it would last 1 to 2hrs. The nurse came up to me at 215pm and said she was already ready to be picked up. They said she was fine and it went well. That was the best news i had all day. My baby was ok. We headed straight down to get her from theatres. We could finally see her face. No more tubes, nose prong oxygen, masks or anything. Just her pretty little face. Once back in ICU i had to wait about 20min or so until i could go in to see her. They had to fix her up a bit before we could come in. It didnt look as bad or scary as i thought the trachy would be. Im still very nervous about it as having a trachy will now mean she needs 24hr care. Thats even when we finally get to take her home. I know its not forever. Just a year or 2 as long as things go the right way, then she can go on to live a normal life without it. It could even be sooner rather than later. At least she now has a permanent airway, so if she does get sick once off the vent, all we have to do is hook her up to the vent again and there is no hassles of having to intubate her all the time as the airway is already there right away. Other people have told me that this is probably the best thing for her. She wont burn up all her calories just on breathing. She can gain more weight and get stronger which gives her lungs the best possible chance to improve which is what we want.

200 days in hospital and intubated again

2008-05-01T22:12:00.005+10:00

30/4/08 Today is Skyla is 200 days old, thats 200 and all in hospital. This morning a 6am Skyla started another one of her episodes. It lasted quite a while. She was blue and mottled. Sats in the 50s. She was on 100% oxygen, they bagged her but they couldnt get her up past 75%. That was it, it was time to reintubate her. I was a mess as i knew that this means Skyla will now have to have a trachy. But if its the only way for my daughter to get better, its what we have to do. They Drs rang the ENT people to see when she can have her trachy. They have booked us in for tomorrow. We dont have a time yet as they are squeezing her in. Our Dr told us that he expects Skyla to be on the ventilator for atleast 6mths, probably in hospital 1 to 2yrs they reckon. I was in shock when he said that. I couldnt believe it. But if we want her home thats what we have to do.

Finally Extubated

2008-05-01T22:02:00.003+10:00

28/4/08 Skyla was finally extubated today. It took alot longer than expected as her xrays have been pretty shocking. There is alot of scar tissue all over her lungs. The Drs have said that if she needs to be intubated again she will have to have a tracheostomy which is the breathing tube in the neck. This is because her lungs are really bad as she has chronic lung disease. The Drs think will happen really soon.
29/04/08 Today Skyla had a pretty good day, she had a nice bath and we weighed her. She now weighs 4.4kg. Not much of a gain but considering how sick she has been, she did really well in that respect. She is still on the cpap mask. She did have one episode of desating today. She dropped to 59% She come up pretty quick luckily her little episode only lasted about 10min.

Ventilated Again

2008-04-17T08:08:00.006+10:00

16/4/08 Skyla had a hard day today trying to keep her sats up. At 8am she dropped them to 60% and had to be bagged. The Drs got her back up but her sats dropped down to the high 70s low 80s. She was on 100% oxygen. This went on for a little while then they decided they would ventilate her. As soon as they came over to intubate her she bought her sats back up to 90. She must have known what was about to happen. At about 2pm, she started to cough heaps and as the nurse went in for a suction, she just dropped. Down to the 50s. They bagged her but couldnt get them above 70%. It was time to intubate her. The went to intubate her orally first but as they did it she wasnt quite paralysed enough which then cause her heart rate to drop into the 50s. They had to give her adrenalin and perform CPR on her again. They did chest compressions for about 20 seconds then she was fine again. Once they intubated her through the mouth they swapped over to the nose. After it was all done i was allowed back in to see my beautiful little Skyla again. Back on the ventilator, her 5th time in 6mths. She was back on the midaz and a high infusion of morphine. Later on that night they put another central line in her neck again.
17/4/08 At about 2am Skyla became very unsettled. They bolused her heaps of morphine and midaz, they gave her diazapam, vallergan and chloral hydrate and she was still fighting. Her sats dropped to the low 80s and went blue and mottled. They ended up having to muscle relax her. This seemed to work. Today she had a really good day. Alot more settled, which was great. They did a ultrasound today just to make sure she hadnt reherniated again. She hadnt but they did notice a tiny defect on the right side of her diaphram. They arent concerned as the liver is right up against it so nothing can sneak through the hole as the liver is blocking it. I was concerned that the liver would go through but they said there was no chance of that as the liver is a huge solid organ and the hole is tiny. Hopefully she has a great night tonight and is over the worst of the RSV. The photo of Skyla with the guys are some of the guys from Sydney Roosters Rugby League team.

RSV

2008-04-15T07:55:00.002+10:00

14/4/08 Today Skyla had a MPA done to see if anything showed up. It did, she is RSV positive. So now we have this chest infection to fight off. Today she had an episode of desating again. She was blue and working very hard. They had to take her off bubble cpap and bag her for about 15 to 20min. It took a while to get her sats up again but once they did, they put her on the vpap machine. It seemed to settle her and calm her for a while. All her s came back fine, which was good. The Drs said RSV normally lasts about 10 to 14 days. The kids tend to get worse before they get better. I just hope she doesn't get that bad that she needs to be ventilated again. They lost her results from a renal scan she had last week. We are hoping to get results tomorrow so we should find out what the little mass they found in her abdo was. They are still thinking gallstones. I just hope she doesn't need anymore operations. Will update soon.

Back In ICU again

2008-04-13T21:10:00.004+10:00

12/4/08 Skyla had 3 episodes of desats this morning again. Lasting 20 to 40min each. ICU came in to review her but by the time they came in she was perfect again. (as usual) At 905pm she started to desat again. The Dr was called and she was given some chloral hydrate 30min into it to try to calm her down. Ihr later and still desating, the Dr went to ICU to let them know what was going on. By the time they came in it was 1 1/2hrs later and still going. She was working so hard, mottled and her lowest sats that i seen was 48%. She was wheezing too. They called for a mobile xray of her abdo and chest. They gave her a nebulizer through the mask. After the xray was taken and they went to remove the xray board from under her. As they lifted her up her sats dropped to 53% and had very little chest movement. She had had enough and was too exhausted. They thought she was ready to arrest at any moment. They started to bag her and get her straight to ICU. On the way to ICU her sats stayed in the 70s. They couldn't get them up. Once taken to ICU she was put straight on bubble cpap. It did take a while but they eventually got her sats back up in the 90s. She calmed down a bit and was beginning to settle down finally, but then her prongs in her nose from the cpap came out so she stared again. I think the lowest her sats went this time were 59%. They thought it best just to bag her to get her back up before putting her back on cpap. It took prob another 10 to 15min to get her back up and back on the bubble cpap. Her chest xray showed more patches on her right lung. (that is meant to be her good lung too) She then spiked a temp of 39. They think its another infection. they think its probably RSV .
13/4/08 Today Skyla is six months old. HAPPY 6MTHS BABY . She had a good night, they said when i came down this morning at 6am. Temperatures all night though, but otherwise she was pretty settled. Today she was ok. She started to gag a bit again and every now and then her sats would drop a bit. I think 80% was the lowest today. We would just have to give her a bit more oxygen, and then her sats would come up again. She is still working pretty hard, recession and a tug.. She has been sitting in the low 90s all day. Normal for her is the high 90s. She had cultures today but still waiting for the results and they will do a MPA in the morning to see if she has caught RSV or anything else.

The Ward, and no right clavical bone (collarbone), More desats

2008-04-11T21:19:00.007+10:00

8/4/08 Today we went to the ward as she is doing really well. No desats or anything, it was great. I also found out today that she has no right side clavicle bone. Its the right side of her collarbone. After all her xrays (over 115 mind due and 6mths later) they finally realized she didnt have that bone. They dont seem to know what this means. Whether she will be able to crawl or not as it gives her arms the strength. So i guess we will just have to wait and see. She does use her arm but i did notice that she does use her left arm more.
11/4/08 She had been doing really well until today. She started doing her gagging again. She had 3 episodes of desats today. Went mottled and dusky. At one stage we couldnt even pick up her sats on the monitor as she had shut down abit. The first 2 went for 30-35min and the last one went for 25min. They called ICU in on her again but by the time they came in she was ok again. If she does it again im pretty sure we will head back to ICU. Skyla had a abdominal and chest xray today too. They said her lungs are still the same, (crappy) but the also noticed a small mass. They are not sure what it is. They think its either a clot or maybe a gallstone. They are not sure but will be looking into it. I just hope its not a tumor or something like that. They will prob do a ultrasound on her belly tomorrow hopefully. Like I've said before, its one thing after another. I just hope no other mysterious things pop up on her. The Drs are even scared of her as they dont know whats gonna pop up next. Please baby girl, NO More please. The photo above shows no right clavicle. Skyla and her big brother Blake and 2 pics of our little fighter Skyla.

The Toughest Little Girl Around

2008-04-04T12:51:00.006+11:00

SKYLA MANAWA TEMAIPI

A FIGHTER FROM BIRTH

Born at 34wks weighing 1.7kg (3.7 pounds)

Coarctation of the aorta repair (operation 1)

Congenital Diaphragmatic Hernia repair (operation 2) (stomach, spleen, small and large intestines, and part of her liver up squashing left lung)

2X episodes of Necrotising Entercolitis

Chronic Lung Disease

Pulmonary Hypertension

5 infections

Severe reflux

Turns blue everyday

Gastrostomy, Fundoplication, tongue tie release, lip tip release (operation 3)

LBO procedure (camera down to check airways)

2 Cardiac Arrests

4 general anesthetics

8 blood transfusions

7 or 8 central lines

Heaps of needles

Cleft palate (to be repaired soon)

Small VSD (hole in heart) (repair in future)

over 115 xrays

Influenza

Urinary infection

Thats everything my brave little girl has had to go through.

You are so brave Skyla. We love you so much. I must have the bravest little girl on earth. Keep fighting along baby girl. You'll be home with us very soon.

Skyla Manawa Temaipi 5mths & 2wks

2008-04-04T12:26:00.005+11:00

As you can see by these pictures, she is still very little. Nearly 6mths old, weighing in at 3.8kg. Still the size of a newborn, but she is the toughest little girl around.

Extubated and on cpap

2008-04-04T11:59:00.003+11:00

1/4/08 Today Skyla was extubated at 12pm. She did really well. They put her back on the cpap mask that she absolutely hates, but so far seems to be tolerating it well. I think its because she is still on midaz and morphine. She doesn't need those drugs but they cant just turn them off or she'll get withdrawals from them. So we just have to wean her a bit each day. The morphine i bet will take weeks to get her off. I got my first cuddle today in 15 days. I was so excited. I missed it alot. We weighed her today and she has lost so much weight. She did weigh 4.1kg, now she weighs 3.8kg. That was my sons birth weight and Skyla is 6mths in a week. I just hope she can move forward now that she is over the flu. It really took a lot out of my little darlin.

Happy Birthday Blakey Boy

2008-03-27T22:22:00.002+11:00

28/3/08 Today is Skyla's big brother Blakes birthday. He turns 8yrs old today. Happy birthday Blake. Today i let him have the day off school and i had a day away from Skyla. We headed off to the Easter Show today, just the 2 of us. We had a fun day. We first went and visited all ther baby animals and got to feed them. Blake had a photo with some wrestlers and got to sit on a police motor bike. We played all the show games. Didnt go on any rides though. Blake won a few things for his little sister and we got heaps of show bags. We also watched some of the wood chopping and watched the motor bike and v8s speeding and jumping round the track. It was a really good day. I got sun burnt of course. Blake enjoyed himself which was the main thing. Blake got so many presents for his birthday. He was really happy.

Happy Easter, Off Muscle Relaxant

2008-03-27T22:20:00.004+11:00

30/3/08 On easter sunday Skyla was taken off the muscle relaxant and coming along ok. We have got the all clear that she is over the influenza but now she has a urinary infection from the catheter that she had in. They took it out and replaced it with a new one. She also has another infection from the ventilator tube. The infection is called Kelbsiella. They don't seem too worried about that one because she has been in hospital for so long and been on the vent 4 times. They started to give her the meds for these infections. Once they stopped the muscle relaxant she moved within 30min. They didn't think she would move until 5 hrs later. She is so use to all these drugs its not funny. Today we had visits from the easter bunny and the easter princess. We got so many easter eggs.
Blake, Skylas big bro, was very happy.

CPR, muscle relaxed, adrenalin and the flu

2008-03-21T12:15:00.006+11:00

18/3/08 Skyla had a very restless night as she is so immune to all the drugs she is on. She started to cough today and they went to do a suction. She ended up splinting her chest. This made her have no chest movement so the vent wasn't able to ventilate her at all. They had to bag her. Her sats dropped to 55%. They had to rock her (muscle relaxant). That was the only way to stop her from splinting.

19/3/08 At 10am today Skyla did it again. She splinted her chest, but this time her sats went to 50 and her heart rate dropped right down to 50. Normal for her is 100-140. We nearly lost her, thankfully all her wonderful nurses and Drs were right there to bring her back. They muscle relaxed her right away. She had 2 hits of adrenalin another drug (not sure of name) to get her heart going. They had to bag her and do chest compressions. She was very blue. It was really close. It lasted about 1min 30sec. She goes down so quick. After all that she was fine. At 12:30 we had to go down to xray so they could put in a bigger size peg in her belly. (her feeding tube) but they are also putting in a jejunal in too. (that goes down to her intestines) That went off without a hitch. An hour or 2 later we found out that she also has para influenza type 1. (the flu) So because of this she will stay on the vent longer as she is struggling a bit as we are trying to wean her of the vent. Later on that night i went off to bed at 10:30. I stay up on level 3 in the hospital. I got a phone call at 11:20pm, she did it again. She splinted her chest. Heart rate 40, sats 60. CPR was performed on her again, adrenalin given and muscle relaxant. Another close call. Lasted 1-2min. This time they decided its best they just keep her muscle relaxed so she cant move. They put her on a rocuranium infusion. They also put in an arterial line so they can monitor her blood pressure and be able to get bloods when needed. I stayed with her all night.

20/3/08 A good day today. Lots of muck on her chest and coming out her nose all the time. Skyla is now having physio about 5 times over 24hrs. Because she is muscle relaxed, she is unable to cough so the physio is there to help get all the secretions out of her chest.

21/3/08 This morning i came down to Skyla. They said she had an ok night. They did have to bag her once as she had hardly any chest movement because of all her secretions on her chest. She had lots of suctions throughout the night and they had to get the physio in at 1am because of hardly any chest movement. Her secretions on her chest are so thick which is why it is hard to suction her. The Drs met today and they plan to leave her muscle relaxed until she is over the flu. She is finding it much harder with the flu, plus she has chronic lung disease. I seen her xray this morning of her chest. It is pretty shit. White all over, even her good lung. It may take a while to clear. By her having chronic lung her lungs will never be great. She is on so much support on the ventilator at the moment. (oxygen 50%, peep 8, Rate 35, pc above peep 28) and to get her off the vent we need (oxygen 21%, peep 5, rate 0, pc above peep 0). So by that you can see how much support she is on. Hang in there baby girl. Keep fighting. We love you so much Skyla, just keep fighting.

LBO, Heart surgery to come

2008-03-17T12:06:00.003+11:00

17/3/08 Today Skyla had her LBO. She came back ventilated and i was told that her right nostral was narrow but everything else was fine. She is currently in ICU. She came back to ICU on Saturday 15th march as she kept desating. The Drs seem to think now that they ruled out other problems with with the LBO, that it might be her heart that is causing her to desat all the time. Skyla has a small hole in her heart which may now have to be fixed. She is having a heart echo today and they will discuss it at a meeting tomorrow at a cardiac meeting. We will learn more then. If she does need this operation, this means open heart surgery for my little . She is so strong, i just hope she can keep fighting. If they can fix the heart and she comes through great then all we have left will be her cleft palate repair. At the momment she is on the vent , but she is fighting the sedation. She is immune to the morphine and midaz and its just not sedating her. The added in some presedix to see if that will help but if it doesnt they may have to just extubate her. The reason they are keeping her on it, is because her lungs are wet and very patchy at the momment. They are trying to rest her little lungs.

Quick update

2008-03-12T08:31:00.002+11:00

Sorry for not updating sooner. Will give more details later. Skyla made it to the ward on 5th March. That night she pulled out her gastrostomy tube in her belly again. So they are now feeding her NJ into her intestines. Her gastrostomy is on free drainage. She has been doing lots of gagging. Lots of desating (lowest 46%sats), lots of temperatures, at least one a day. Next week she will go back to ICU for a day or two as she is going to have a LBO. Thats where they put a camera down to check out her airways. That means another general and back on the ventilator. They are hoping to extubate right after the procedure is done. But like the Drs say, it is Skyla so she may come back vented for a few hours only hopefully. Will try and update again soon.

Pulled out her gastrostomy tube

2008-02-28T20:42:00.004+11:00

28/2/08 This morning i woke up at 5 15am. I thought something was wrong with Skyla. I had a feeling something had happened, so i rang down to check on her. They said she had a desating episode at midnight and that at 5am this morning, the cheeky little girl decided to pull out her gastrostomy tube. (the new one in her belly). It was being held in with a little balloon at the end of the tube that has filled with a bit of water. She actually managed to pull it out, balloon still inflated through her tiny little hole in her belly. The nurses said she let out a little cry. By the time the nurse got to her she was happy and smiling. She is so cheeky. 2hours later it was inserted again. It was pretty red and swollen. They gave her some morphine incase it hurt her but she didnt even flinch. Since then the feeds have stopped as the hole is now abit big and it is leaking. She is back on TPN and LIPIDS for 48hrs as they are hoping the hole will reduce in size, otherwise they may have to insert a larger tube or re operate and make another hole for the gastrostomy. Hopefully it wont come to that. Tonight she decided to drop her heart rate to 51 and desat to the low 80s. Its just one thing after another with our little girl. When she is good, she is great and when she is misbehaving, she really misbehaves. Her xray the other day showed she has pretty crappy lungs. Its the chronic lung disease and she has pulmonary hypotension. They said its pretty bad, but i am hoping that because she is still young, her lungs will continue to grow and get stronger in time. They did say when we eventually get to go home she may have to go home on oxygen for a bit. That scares me a bit but if its a way to get her home then thats just what we will have to do.

Our smiling Skyla

2008-02-25T23:07:00.002+11:00

She starts smiling about 15seconds into the video. Sorry, its sideways. Its the way i took it on my phone.

Blood transfusion

2008-02-25T22:23:00.006+11:00

25/2/08 Skyla had a few episodes of desats throughout the night, but had a pretty good day today. One desat this morning at about 10am and thats it. Mind due it was a big one. Her sats read 48% but it was probably more in the 50% mark. Her lips were definately blue. It lasted about 25min. They did bloods today and her Hb was 7.8, so tonight she will be having a blood transfusion. Her 6th one i think. We had visits today from play therapy, they bought her in a tiny maracca. She shook it a bit. She didnt want to let go of it. It was funny. We also had visits from the physio people. We are trying to get her to face to the right as her head is pretty flat on the left side, but she just makes her way back to the left. Cheeky girl she is. She also had an echo on her heart today. Because of her VSD the blood is shunting a bit which doesnt really help her desaturations that she has. I come home tonight so hopefully she will have a great night. Her gastrostomy tube was leaking a bit today so they stopped her feeds all day until the surgeon came round. He tightened it a bit then the feeds were started again. Only at 5ml p/hr. They will up it every 4hrs. Oh forgot, we weighed her today and she now weighs in at 3.83kg. But because of the gastrostomy she is probably about 3.7kg and she is 53.5cm long. My son Blake was 3.7kg born and 52cm long. So by that Skyla is still the size of a newborn at 4 1/2 mths old. She is getting there, slowly but surely.

Not a good few days

2008-02-24T22:14:00.004+11:00

22/2/08 I came down this morning and Skyla was still very unsettled. At 1pm the Drs decided to start her on some phenebarb to relax her a bit. This seemed to work really well. She had a good rest which was great. We took out her NG tube today. YAY, finally no more tubes in her nose. Its the first time ever without a tube in her nose. Its only taken nearly 19wks. Look everyone, no tubes

23/2/08 Skyla had a few desating episodes throughout the morning. We decided to take her off the cpap today. She was so happy. She was even smiling. It was good to see. She stayed awake for a bit then decided to go to sleep. She slept for about 3 hours. She just had the blow over of oxygen til she woke up then we put the nose prongs on her. They started putting gastrolite down her gastrostomy tube today. She coped really well, and absorbed it. Tomorrow they will start her back on her formula. She is on Elecare 30cal. I spoke to the head of ICU today and he thinks we are gonna be in hospital for at least another few months or maybe even longer. So the way we are going, we wont have our little home until she is probably 6 or 7mths old. Maybe even longer.

24/2/08 Skyla dropped her sats a few times today. 50% sats mind due. Her lips were blue. They had to give her some Midaz to calm her down today. It worked instantly. One minute she was crying and the next she was quiet and floppy. It scared me cause i didn't think it would work instantly, but it did. She was put back on cpap again. Skyla started back on her feeds today. 5ml to begin with then increase by a ml every hour. Hopefully she will be at full feeds soon so that we can have her central line taken out. I them cause she always gets infections from them. So hopefully it will be out in a day or two.

Extubated this morning

2008-02-21T11:22:00.004+11:00

21/2/08 Skyla was extubated this morning and put straight on oxygen nose prongs. She was very unsettled and dropping her sats. This went on for a little while so they decided to put her back on cpap. That just seemed to make her worse. She then had a few bradys. She dropped her heart rate to 51 at one stage. It was pretty scary. I was hoping that once this operation was over with, she would stop all this desating. So much for wishful thinking. Her lungs are still abit wet, and she does have the pulmonary hypotension too so that doesnt help much.

Plan to extubate already

2008-02-20T21:20:00.002+11:00

20/2/08 Skyla was still abit unsettled today. They did how ever manage to wean her vent down alot. They also weaned her morphine down from 50 to 20 and also weaned down the midaz. Not that they helped her much as she is pretty immune to it all as she has pretty much been on morphine for about 13wks of her life. She is now 18 1/2wks old. So hopefully we can get her off it asap as she does get withdrawals. They plan to extubate her tomorrow. I wasnt expecting this so soon but its great news. I was expecting her to be on it for atleast a week, so the sooner the better, just as long as she is ready. She is very swollen in the face today. Her eyes are very puffy too. She has these beautiful Angelina Jolie lips. They are so cute. Her top lip is swollen for her lip tie that they cut yesterday in her op. Other than that she had a great day. They didnt worry about an arterial line. As long as her sats are ok and being on the vent they can monitor her CO2. They will probably do a gas in a day or two just to make sure. So hopefully she will have a great night tonight and be extubated tomorrow. Fingers crossed.

Not a good night

2008-02-20T08:18:00.008+11:00

20/2/08 Skyla had her operation yesterday. She went in a 2pm and came out at 6pm. They did the gastrostomy, fundoplication, toungue tie, she also had a top lip tie and they found that she also had a large hiatus hernia. The surgeon said it was successful which was great. She remained stable throughout the op. Over night she had a tough night though. She was very restless. Skyla had to be heavily sedated. She has had a heap of morphine, midaz, rock, presidix (not sure of spelling) and valegan and she is still fighting it. Skyla has been splinting her chest, dropping her total volumes on the vent, dropping her sats and she had an xray this morning. Her lungs are very wet. They tried to put an arterial line in her last night a few times and have also tried a few times this morning with no luck. They will try again today after the drs rounds. I just hope my little can keep fighting. The pictures are of my brave little girl post op. The other is her huge hospital file and she is only 19wks old.

Operation Today

2008-02-19T08:07:00.003+11:00

19/2/08 Today is Skylas big day for her fundo and gastrostomy operation. They will also be releasing her toungue tie. She may have to go back on the nitric machine as she wont be able to have her sidenifil for her pulmonary hypotensin through her peg for a few days till her stomach is back to normal. She was a very good over night. Her last episode was at 10:30am yesterday morning, but she did put a little show on for her surgeon last night when he came to see her. She vomited twice. Cheeky she is. She hadnt vomited all day. Thankfully she didnt desat with both vomits. I think she will be on the ventilater for a few days to a week. Hopefully not too long cause she gets very lazy on the vent, and lets it do all her breathing. Skyla is 4th on the list for her op today.Her surgeon has decided to do an open cut as she is still pretty small, 3.58kg. So she will be back on the morphine and midaz to keep her pain free and nice and relaxed after the op. He will go through her old diaphragmatic hernia scar. He said he may have to make it a little bit bigger though. The surgeon said roughly 1pm today. Hope it all goes to plan and she is smooth sailing through her operation. I will try and update tonight after the operation.

what a bad week

2008-02-17T22:16:00.006+11:00

17/2/08 What a bad week my little girl has had. Over the last week she has had 27 episodes of reflux and desats. They range from 10min to hours at a time. Most desats are in the 60s and 70% sats. Her worst one was 49% sats. We had to bag her to get her up. It was horrible. She was blue. They tried to then put her back on cpap but as they would take the bag away and try to put cpap on she would desat to the 50% sats. Twice she did this. It was very scary. This particular episode lasted for 1hr 35min. We ended up just giving her the blowover of oxygen until she settled. Thank god they didnt put her back on cpap. She absolutly hates it. It would have made her so much worse. The plan is fundoplication, gastrostomy, LBO and toungue tie operation on tuesday 19th feb. Only two more days and then hopefully my little girl will be on her way to getting her home for the first time. I just hope she doesnt have too many more episodes. She had 7 today. She gets so exhausted. She now weighs in at 3.58kg. She is slowly getting up there. We are now day 126 in hospital. 105 of them in ICU.

Having a bad day

2008-02-07T21:20:00.000+11:00

7/2/08 Well today started out pretty good until 10am. We took Skyla off cpap this morning for her bath. Just as we put her in her bath the blood sisters came to take her blood. She decided to leave a lovely package in the bath so while we refilled the bath they took her blood. It took them 3 attempts. She was screaming. They ended up just doing a heel prick. I cant stand it when they dont get her first go. Anyway after that we gave her a bath. She loved it. She then started to work really hard with her breathing so we had to put her back on cpap. My little girl absolutely hates the mask. She dropped her sats to 65-70. Her pretty pink lips went a horrible colour and she went mottled. I hate seeing her like that, she was gasping for breaths. This lasted for about 30min. She got to the point where she is just so exhausted she just goes to sleep. This happened on 4 occasions today. This would have to be the worst day she has had in a long time. The lowest i seen her sats today was 59%. Her lips were blue. At 4pm the Drs decided we try take her off cpap and just use the nose prongs. This seemed to work. She was really settled and calm. I think she even smiled a bit today. She has never really smiled for us. It has only been with wind. It was really nice to see.

Pics Of Skyla

2008-02-04T15:59:00.000+11:00

Finally a date set for operation

2008-02-04T15:04:00.000+11:00

4/2/08 Wow how time has flown. My little girl is now nearly 4mths old. She has come so far in her short little life. We weighed her on Saturday 2nd Feb and she weighed 3.19kg. Over the last 2wks she hasnt put on any weight at all. They decided to up her milk to 21mls per hour and upped her calories to 28. We weighed her today and she is now 3.24kg. The heaviest she has ever been. If she doesnt start putting on weight they will go up to 30cal in a few days. We finally have a date for surgery. Not till the 19th Feb. Its 2 wks away but atleast we finally have a date. She is still having reflux episodes. The other morning she dropped her sats to 54%. Skyla loves scaring us to death. She just gets so upset. She is still on cpap but every now and then they take her mask off to give her little face a break. When its time to go back on she really gets upset and drops her sats. We are still in icu, hopefully we will stay here till after her operation. They expect her to be on the ventilater for up to a week, so then maybe a week after that we will be able to go to the ward. Since she was born we have had 4 ICU admissions and 3 ward admissions. This next surgery will be her 3rd operation. Skyla then will need her coarctation repaired again, her cleft palate and then open heart surgery for her VSD. So 4 more operations including her one on the 19th left for my little princess. She has to be the toughest little girl i have ever known. Im so lucky she is a little fighter.

operation cancelled again

2008-01-31T21:39:00.000+11:00

31/1/08 Well tomorrow was meant to be her fundoplication and gastrostomy operation, but was once again cancelled because now skyla has wet lungs and pulmonary hypotension and the fact that she hasnt put any weight on. She still weighs 3.22kg. The dr said today that we will do the opeartion in a few weeks depending on her lungs and heart. She had a heart echo the other day which showed the hypotension and she still has a small VSD. It also showed her coarction of the aorta that was repaired still has a narrowing in it so she will eventually need another operation to inflate a balloon in there. At about 8mths the dr said. It is one thing after another. Its never ending. So atleast another 8wks in hospital i reckon. She was a bit unsettled today. She is still on cpap. A peep of 6 and in a ltr of oxygen. We took her off it this afternoon with no nose prongs and she sat on 97 to 100%. The funny thing is when on cpap she sits on 90 to 94% sats. (Work that one out) strange ay? We left her off for 1hr. She did really well. We put her back on before she started to work really hard. We had a visit from little George Cartwright, his twin brother Angus and there mum Alex. Alex bought me Blake and Skyla a present. It was so sweet of them. Skyla got a monkey toy rattle. It is so cute. George picked it out himself. Thankyou guys, Skyla loves it. I have been trying to upload pictures but for some reason the computer wont let me. Its really annoying me. Ill keep trying. So stay tuned for them.

ICU update

2008-01-20T09:03:00.000+11:00

20/1/08 Skyla seems to be getting worse with her reflux episodes. They are happening nearly every couple of hours. Tomorrow we are going to meet with the dr and surgeons about surgery. Im pretty sure she will have surgery this week. She really needs it, she is in so much pain. They will do a LBO first. Thats where they put a camera down in her airways just to make sure it definitely is the reflux and not something more. If it proves that it is reflux, then they will continue on with the operation. They are also going to nick her tongue tie. Hopefully that will help her to suck her bottle easier. Not that she has had the chance to try it yet. Fingers crossed she takes to it well. It will be harder too because she also has a cleft palate. Other than that she is going pretty well. She now weighs in at 3.1kg. She is now 14wks old.

Meeting Kylie Minogue

2008-01-17T21:15:00.000+11:00

14/1/08 Skyla is still in ICU. She is going ok. Still having lots of reflux episodes. She is roughly having 3 to 5 episodes a day, ranging from 5min to hours. We were cheered up a bit today with a visit from Kylie Minogue. It was pretty exciting. She is sooo little. She looked great though. Im still waiting on the professional pics. In them she has her arm around Blake. Wait till he shows his friends at school.

to the ward and back to ICU again

2008-01-10T22:41:00.000+11:00

6/1/08 Skyla made it back to the ward today after spending 6 more days in icu. On sunday 7/1/08 she did it again. At 10pm she aspirated again. From 10pm til about 10:30 she was working really hard but calmed down for 10min or so. Then she vomited and it started again. She was screaming and gasping for breath. It wasnt until about 11:30 until the ICU drs came in. They took her straight to icu. Once there she continued to desat and scream and was working really hard. They put her on bubble cpap. She was fighting it. Her nose was bleeding, her mouth was bleeding because she was so unsettled. The next morning they put her on vpap. She was much more settled with that. Since then she has starting doing bradys and still desating. They are trying to wean her oxygen. She has come down from 2ltrs to .25 of a ltr. We tried her off the vpap today (9/1/08) but she just drops her sats straight away. Tomorrow they are gonna do a contrast study to see where her NJ tube is actually sitting, to make sure its in the right place. I just wish she would keep her sats up. Its been 90 days in hospital today (10/1/08) 65 of them in ICU. Her journey is one hell of a rollercoaster. She goes 1 step forward then 2 steps back. It is so hard. I just wish we can take her home. It wasnt meant to be like this. We should have our baby girl home with us. For her fundo operation she needs to be at least 3.5kg. Skyla now weighs 2.95kg. Hopefully she will start keeping her sats up and off oxygen so we can go back to the ward. A step closer to the door.

Back in ICU, Her 3rd admission

2008-01-02T18:37:00.001+11:00

1/1/08 Skyla had a bad day today. She aspirated into her lungs after she vomited and had trouble breathing. I really thought i was gonna loose her today. It was the scariest day of my life. They started giving her oxygen but she kept dropping her sats. She turned blue and was blotchy all over. They hit the emergency button for a code blue. ICU came in and they managed to stabilize her. There was about 7 people in there working on her. The staff from the ward and ICU were fantastic. Without them my little girl wouldnt be here today. Skyla is now in ICU on CPAP. Luckily she didn't need to go back on the ventilator. They think we will be there for a few days to a week as long as she goes well. She is one tough little girl. They had 3 people holding her down as she was trying to fight everyone off. She is now 11 1/2 weeks and weighs 2.58kg. She is still very small but she is so strong. Must be the maori blood in her i think. Thank god she is a fighter. They have decided to take out her NG feeding tube and put in a NJ which goes further down past her stomach as she has really bad reflux. They will leave her with that for a while so that she will grow better and will probably have another operation to stop her reflux in about 6 to 8 weeks i think. They still have to discuss it but that is pretty much gonna be the plan. At least we will be able to bring her home on the NJ feeding tube. Its a bit daunting but at least we will have our baby girl home with us.

Merry Christmas from Skyla

2007-12-26T22:25:00.000+11:00

The Wiggles sing to Skyla

2007-12-26T22:18:00.000+11:00

A Wiggly Christmas

2007-12-26T22:00:00.000+11:00

25/12/07 Merry Christmas everyone. We spent xmas eve at home so that santa could come to Skyla's big brother Blake. He was so excited. We were up at 5am opening his presents and then we were off to see Skyla. Blake got really spoilt this year. PSP, nintendo wii, games, clothes, you name it he probably got it. Lucky boy. We arrived at the hospital about 7am. Santa had left a bag of presents for every child in there. Not just one present but five. Lucky little girl she is. Skyla had some visitors today. The wiggles came to see all the sick kids. It was so wonderful of them to take the time away from their own families to make our day so special. Thanks wiggles, it really did brighten our day. They even sang silent night to Skyla at her bedside. It was great. I dressed her up in her white dress. She looked so beautiful. Like a little princess. We weight her this morning, she was 2.38kg. She is gaining but very slowly. Skyla had a good day on xmas day. She behaved well. The plan is to start bolus feeds on thursday so we will see how we go there. I just hope she tolerates the milk.

Ward update

2007-12-26T21:54:00.001+11:00

Sorry about the delay in updates. Been too tired when i do come home which is hardly ever. Pretty much at the ward all time.Skyla has had a really good 2 weeks at the ward. She has been behaving really good. About 3 or so desats here and there, mainly after a vomit. Yes she is still vomiting every now and then. Otherwise she is doing ok. The Drs reckon at least another month in hospital. Its such a long time. That means xmas in hospital, but oh well, we will get our little girl home soon.

To the ward we go!

2007-12-14T21:11:00.000+11:00

11/12/o7 We headed off to the ward today. Bubba had a fantastic day. No bradys at all. No desats, she has been wonderful.

13/12/07 Her Dr came to see her today. He had a plan. The plan is: Start bolus feeds on Monday, wean morphine and clonidine and stop caffeine. Today she had an xray on her chest to see if the NG and NJ tube in her nose is in their right spots. He is also gonna get her to have a hearing test soon as she didnt have one at birth. Skyla is starting to get a bit constipated today.

14/12/07 Bubba had a few vomits today. A bit unsettled. They started her on some medication today as she is still constipated. Had bloods taken and had a visit from santa today. She got 2 presents. A hand painted wooden pull along duck and some winnie the pooh blocks for when she is older. She even punched santa in the nose. Cheeky little girl she is.

7/12/07 - 10/12/07

2007-12-14T20:56:00.000+11:00

7/12/07 - 10/12/07 Skyla had an ok week. A few bradys here and there. Atleast one per day anyway. I run out of breast milk so as of 8/12/07 bubba is on Karicare, plus they will soon be adding extra calories to it to fatten her up. Thinking of sending her to the ward on tuesday 11th December. On the 10th Damien Leith, Australian idol winner 2006 came and did a little concert for the kids. I took Blake to it. He enjoyed it. All the kids that went to it will be on his up coming film clip to his song and will be on Tv as he is appearing on a saving babies series. After that we found out that Delta Goodrem was up at the starlight room. Skyla had her first walk out of ICU with a sats monitor of course. We went to the starlight room and had a photo with Delta. She pretty much slept right through it all. We also weight her. Currently 2.18kg.